'Joey's strain': OC boy with autism has own strain of medical marijuana

Five years ago, Orange County mom Mieko Hester-Perez made a controversial decision that may have saved her son Joey's life.

May 1, 2014 12:00:00 AM PDT

At his age, most kids get their first bike or their own computer. Joey Hester-Perez got his own strain of medical marijuana.

"It's called Joey's Strain," says Joey's mother Mieko Hester-Perez, who believes the decision to use medical marijuana saved her son's life.

"Oh, I definitely thought he was going to die," recalls Mieko. "He's 42 pounds, he's 9 years old and the bones in his chest were very visible."

Joey was diagnosed with autism at 16 months of age. He was later diagnosed with Duchenne muscular dystrophy. Joey's symptoms were severe and grew worse over time. Mieko and Joey's team of doctors tried everything. At one point, he was on 13 different medications.

"It was probably the most horrible time in my life, in our family's life. We did not know what to do. It was a very dark place for us," says Mieko. "I did have people tell me, 'You need to place Joey in a home.' And I said, 'No, Joey is a part of this family. He's going to stay a part of this family."

"It's very satisfying and now we're getting more and more parents to work with," says Aaron Justis, the president of Buds and Roses Collective. "People are getting it. The science is behind it. It feels really good."

Aaron says he's seeing more and more parents come into his collective looking for help with their special needs children. Aaron stresses that none of the children smoke the marijuana. Instead, they consume edibles like cookies or brownies. Oils derived from cannabis are another option.

"So they just can take a grain of rice-sized oil on their finger, put it under the tongue, and it's very effective. That's the most concentrated, purest way," says Aaron.

Kyle Kushman is a master cultivator of medical marijuana. He created "Joey's Strain" using his own line of nutrients called "Veganics," made strictly from organic materials and nothing from animals.

"This is one of the most therapeutically active substances known to man," says Kyle, who likens his work to that of a winemaker. "Winemakers spend their whole lives trying to create one new variety of wine they can be proud of. Cannabis is so special that every seed that comes off of a cannabis plant is unique and has a slightly different cannabinoid profile."

Cannabinoids are the active molecules found in marijuana, or cannabis; they are the focus of what little research is being done on cannabis in the United States.

"The research on cannabis and autism-related conditions is really just starting," says Dr. Daniele Piomelli, a professor of Neurobiology, Pharmacology and Biological Chemistry at U.C. Irvine.

Piomelli studied the effects of naturally occurring marijuana-like molecules called endocannabinoids on mice with a genetic mutation that causes autism.

"So just by enhancing, increasing the marijuana-like signals in the brain, we were able to revert the entire set of symptoms caused by this mutation," says Piomelli.

Piomelli says anecdotal evidence is growing that marijuana can relieve the symptoms of autism, but he cautions that anecdotal evidence can often be misleading. Clinical trials need to be conducted, but research is being stifled by strict, federal drug laws.

"We are subjected to a control that is, quite frankly, a little ridiculous. If I want to buy marijuana, I can go to the corner and buy it," says Piomelli.

Researchers who want to use cannabis in their studies must navigate a maze of bureaucratic red tape and receive permission from multiple federal agencies.

"It would be much better if the bureaucracy were reduced. It would accelerate the work and we could get effective medicines to the patients much more quickly," says Piomelli.

Other experts agree, including Dr. Sharon Levy of Boston Children's Hospital and the American Academy of Pediatrics.

"I think the best way to treat these kids would be to develop cannabinoids, or these active molecules, into proper medication the way we do with anything else," says Levy.

She cautions that exposing young brains to such powerful chemicals can have toxic effects like increased risk of mental health disorders as an adult and even a drop in IQ.

"I don't believe that patients are best served by a policy that just loosens access to marijuana, and then requires parents to go to dispensaries, which are really not the same as pharmacies, and have them sift through plants and figure out how to administer and what to administer. And because there is no consistency, we don't know if we can replicate the findings when parents go back," says Levy.

Mieko says she's found new purpose in life through helping other families and pushing for the reform of U.S. drug laws. She's active with "NORML," the National Organization for the Reform of Marijuana Laws.

"We need to open the door to more research so we can do this the right way," says Mieko.

Mieko, a single mom who lives in Orange County, says she never expected to become an expert on cannabis. She believes it's taught her to become a better mother and a better advocate for autism-related issues.

"He may never walk, he may never form a sentence, he may never throw a ball. But he will smile, and that's all I've ever wanted," says Mieko.